# Exploratory analysis of smartphone-based step counts as a digital biomarker for survival in ALS patients

**Authors:** Marcos Matabuena, Marcin Straczkiewicz, Narghes Calcagno, Katherine M. Burke, Timothy B. Royse, Amrita Iyer, Kendall T. Carney, Sydney Hall, James D. Berry, Jukka-Pekka Onnela

PMC · DOI: 10.3389/fdgth.2025.1705368 · Frontiers in Digital Health · 2026-01-29

## TL;DR

This study explores using smartphone step counts as a digital biomarker to predict survival in ALS patients, finding that advanced activity metrics improve model accuracy.

## Contribution

The study introduces distributional representations of physical activity as a novel approach to improve survival prediction in ALS.

## Key findings

- Distributional PA metrics improved model performance with a higher C-score (0.68 vs. 0.55).
- A bootstrap test showed statistically significant differences between models at 90% confidence.
- Advanced PA metrics may yield more accurate digital biomarkers for ALS progression.

## Abstract

Amyotrophic lateral sclerosis (ALS) is a progressive and debilitating neurodegenerative disease. Digital biomarkers derived from smartphone data can enable scalable, low-cost, remote, unobtrusive, and quantitative measurement of physical activity (PA). These biomarkers offer opportunities for quasi-continuous assessment of PA levels, which may provide new methods for monitoring ALS disease progression in real time. In this exploratory study, we analyzed data from 31 individuals with ALS (including 16 deaths) with up to 9 years of follow-up (median 3 years) to assess the impact of incorporating smartphone-derived PA measures into survival prediction models. We examine whether the strength of the statistical association with survival differs when PA is summarized as (i) a simple metric, such as the mean daily step count, vs. (ii) distributional representations of PA. The exploratory results suggest that the addition of PA variables defined via distributional representations improves the performance of the model, as reflected by higher C-score values (0.68 vs. 0.55, estimated as the median over bootstrap replicas B=1,000). A bootstrap-based hypothesis test shows statistically significant differences between the two models at the confidence level of 90%. These exploratory results indicate that the use of more advanced metrics to summarize PA time series can produce more accurate digital biomarkers to monitor the progression of ALS, although larger studies with larger sample sizes are required to confirm these findings.

## Linked entities

- **Diseases:** Amyotrophic lateral sclerosis (MONDO:0004976), ALS (MONDO:0004976)

## Full-text entities

- **Diseases:** neurodegenerative disease (MESH:D019636), ALS (MESH:D000690), deaths (MESH:D003643)
- **Species:** Homo sapiens (human, species) [taxon 9606]

## Full text

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## Figures

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## References

21 references — full list in the complete paper: https://tomesphere.com/paper/PMC12894353/full.md

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Source: https://tomesphere.com/paper/PMC12894353